Yesterday was an amazing day. We spent a lot of time in the Word and talking about life and what’s happening in our world. And then we drove to Barefoot Beach, which is in the middle of a nature preserve (watch out for turtles).

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I’m not saying I was so full of energy I could run a mile – but I had a lovely day. We sat on the beach, we waded our into the waves – it was just nice to be doing something, well – normal.

Today is a different day. Pain is higher, heart rate is up, I get short of breath and dizzy when I walk, my hands and feet are numb, I’m struggling with word finding, I can’t think clearly, I’m weak and fatigued (we need a new name for that – it really doesn’t describe the exhaustion so well).

Over the years, I’ve had periods of time where I’ve had lots of good days – still not normal or healthy, but good. I start to think the tide is changing and I’m getting better.

And then I crash.

I usually feel it coming on slowly but sometimes, I just wake up with bad pain and exhaustion – life literally changes overnight.

I try to write positive, encouraging and hopeful posts – I want others to see that life CAN be good even when it’s really hard. But the truth is, life is still hard! And we need to talk about that too.

When you have a chronic sickness, it doesn’t matter what it is, the future can feel dark and scary.

It’s not the fear of dying (although that thought can be overwhelming at times). It’s the fear of not living.

As I was writing this, a trailer for a movie came on with the words: “It’s not the time you have, it’s the moments you share” (A Journal for Jordan).

When you can’t get out of bed, when you are limited on the time you can spend with your people, finding moments to share – and making them quality moments – can be really hard.

But not impossible.

Days like yesterday – those are days I share publicly. Days like today – lying in bed, watching movies, writing my blog – these can still be great days.

It becomes unbearable when I fight through the pain and fatigue to do more than I realistically can. It becomes unbearable when I let my attitude change – when I become frustrated because “I can’t”, when I become discouraged because “I can’t”.

So what if I can’t go play in the surf today. So what! It doesn’t matter!

All that matters – ALL THAT MATTERS – are the moments we share. What you do during those moments is totally, completely 100% irrelevant.

Do what you can when you can. But don’t ruin “moments you share” by letting dark thoughts and feelings overcome you when can’t.

It’s ok to have a pity party – just don’t unpack and live there.

My motto